Thursday, May 23, 2013
so lexi is still having an increase in seizures especially at night so the neurologist has upped her keppra to 4ml in the morning and 5 ml in the evenings. we go and see the nurse practitioner tomorrow to see what to do now. shes been very clumsy and falling alot and hasnt been wanting to sleep so im not sure if its due to seizures or not but its not normal. school is out for lexi next tuesday and then she will be only going on thursdays until kindergarten starts. hard to believe she will be in kindergarten. she had ear tubes placed on monday and did really well with that. which im glad about.
Sunday, May 12, 2013
Friday, May 3, 2013
not sure when i last posted a blog but i know its been a few weeks.last week lexi saw her developmental dr and the sleep specialist. the developmental dr appointment didnt go so well. i dont think it ever goes well but this time the dr pissed me off more than ever. she said lexis development has stalled and so has her language. she then said lexi is like a 2 yr old only bigger. i dont agree with that because in school they say shes developmentally a 3 yr old. the doctor also told me i should feel lucky that she got lexi a g tube. it even says in the notes from the last appointment that lexi is very strong and will not take her meds even for the dr who says she is skilled at getting kids to take meds. plus on top of that lexi doesnt eat as much as she needs to grow so she needs the g tube. then the dr decided to put her on adhd meds which she is not adhd. the first night she had the med she started having seizures again. so i tried another night just to see if it was a fluke and again she had more seizures. i dont understand why the dr would put her on meds when it even says it may increase seizures. now the sleep specialist/pulmunologist was a better appointment. he put her on 2 weeks of antibiotics and ferrous sulfate for low iron. he also said if her cough isn't better in two weeks to come back because he wants to figure out why she has a cough all the time. he did say he wants another sleep study to see if her sleep apnea is any better or if she needs a c pap. so that is scheduled for june 17th i think. over all lexi is doing ok. shes still not sleeping but now shes crying shes in pain so who knows where shes in pain from. her speech class ended for the yr so now she goes to school for 2 days a week. we also moved last week so its been a busy week